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What is Neuromyelitis Optica (NMO)?
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Neuromyelitis optica (NMO, also known as Devic's disease or Devic's syndrome), is a heterogeneous condition consisting of the simultaneous inflammation and demyelination of the optic nerve (optic neuritis) and the spinal cord (myelitis). It can be monophasic or recurrent.

Currently at least two different causes are proposed based on the presence of autoantibodies against AQP4. AQP4+ NMO is currently considered an autoimmune disease (autoimmune astrocytopathy, or autoimmune astrocytic channelopathy) in which a person's own immune system attacks the astrocytes of the optic nerves and spinal cord. The cause of the AQP4- variants is unknown.

Although inflammation may also affect the brain, the lesions are different from those observed in the related condition, multiple sclerosis. Spinal cord lesions lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation (including blindness), and/or bladder and bowel dysfunction.

Devic's disease is now studied along a collection of similar diseases called "Neuromyelitis optica spectrum diseases". Some cases of this spectrum resemble multiple sclerosis (MS) in several ways, but require a different course of treatment for optimal results.

In 2004, NMO-IgG (currently known as Anti-AQP IgG) was first described leading to the distinction between positive and negative cases.

In Anti-AQP positive variants, CNS astrocytes, which are the basis for the glymphatic system are the target of the autoimmune attack. NMO-IgG-negative cases are less understood. It seems currently that astrocytes are spared in these IgG negative cases.

Imagine being 12 years old. You are perfectly healthy, leading a normal life. One morning you wake up temporarily blind. Today we will hear personal accounts what it is like to have Neuromyelitis Optica (NMO) and what is being done to combat the rare disease. What is the best treatment? Is genetic testing available? What is being done to combat this devastating autoimmune disease?

Find out from our expert guests. About Our Guests: Sumaitra Ahmed Sumaira Ahmed is the founder of The Sumaira Foundation for NMO, a nonprofit geared towards raising awareness of Neuromyelitis Optica while fundraising for research to find a cure. Sumaira was diagnosed with sero-negative Neuromyelitis Optica Spectrum Disorder (NMOSD) in the summer of 2014.

While undergoing aggressive chemotherapy the next year, she became the 1st-ever Miss Bangladesh-USA. Her social platform was the importance of education and its correlation to tolerance and a prosperous future for Bangladesh. Sumaira graduated from Boston University College of Communication with a bachelors degree in public relations. She also studied film acting at the acclaimed KNK Acting Institute in Mumbai, India.

Sumaira has acted in numerous projects including Hindi and Bengali music videos, a documentary, and voice over projects. In 2012, she starred as the female lead in an English-language independent film titled, “Humble River.” She is the former Director of Network Development at Boston Laser / Boston Eye Group and is now the Marketing & Business Development Manager at STRATUS Center for Medical Simulation at the Brigham & Women's Hospital. Sumaira created a personal blog, “Flower: The Converted Bostonian,” a lifestyle blog about fine wining and dining, travel, dating & romance, and eventually chronicled her health journey.

Gabriela Romanow In 2014, Gabriela Romanow’s then 20-year-old son was diagnosed with NMO. She refocused her professional endeavors to helping raise money to find a cure for this potentially crippling disease. Throughout her career, Gabriela has focused on raising awareness of, and money for issues which are important to her. She spent a dozen years at ACCION International, a non-profit organization providing small loans to the self-employed poor throughout the Americas, where Gabriela worked in Communications and Development. Gabriela was the president of the Brookline Library Foundation which raised over $4 million to restore and renovate Brookline’s Public Librar and served for a decade as trustee of Brookline’s library system.

After her time with the library, Gabriela worked on environmental issues: as fundraiser for the public radio program ‘Living on Earth’, and as a partner of Double Exposure, Photographing Climate Change, which produced a museum exhibit that traveled the country for four years. In addition to her professional endeavors, Gabriela serves on the boards of the Lenny Zakim Fund, the Cambridge Homes and 1010 Memorial Drive. She currently lives in Cambridge with her husband Bob, and is the proud mother of Jake and Max Romanow. About Our Producer/Host: Kayla M. Sheets is a board-certified, licensed genetic counselor and founder of Vibrant Gene Consulting, a concierge practice located in Cambridge Massachusetts.

Kayla is specialized in taking genetic insights and translating them into greater health and wellbeing for her clients. She also provides expert advice about parental DNA testing to confirm relationships. Our Show was Made Possible by: Hayley Green (assistant producer), Ya Gao (editor) and Sherry Wang (CCTV technical production). For Private Genetic Counseling, visit our website at www.vibrantgene.com. We are also reachable via email (contact@vibrantgene.com) or phone at (617) 433-7874.

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